Welcome to all......

I would like to welcome ALL newcomers to my blog: Gene Chapman's ALS Journey. I was diagnosed with ALS (Lou Gerhigs disease) back on 1/12/2010. It was confirmed on 2/12/2010. I enrolled and started in a 3rd stage drug trial out of the Mayo Jacksonville, Fl. Clinic that will hopefully stop but not cure ALS. My first dosing was on 4/30/2010 and my wife or my daughter in law administers two 20 cc dosages twice a day, one per sitting, 12 hours apart via a picc line that was surgically placed in my jugular vein.

I have filed for and should get disability by the end of August, 2010. Till then, my wife and I carve out a living with our two dogs in the Gainesville, Fl. area.

Tuesday, July 27, 2010

CHOICE...

Good afternoon all. I wish to apologize for the delay in my post to this blog; my Secretary went away for a week and I was lost. While she is given a stipend, she is still a young teen and basically does what she wants.

I am doing well today, no pain and some-what mobile. I am waiting for the MSW she is forty minutes late.

My visit to Mayo went well last week.We found a Five-Guys Burger and had a great lunch. We then went to a Wal-mart and I used a new scooter and was actually a help to my wife which was refreshing. I will certainly do that more.

This weeks blog post is about making choices: this is perhaps the greatest gift that our heavenly Father has given us. I began thinking about this subject when my wife, Sharon, made the comment to her brother, David, that her decision to stay with me and honor her marriage vow "in sickness or health" was a choice she made. That got me to thinking about choices we make everyday that are both important and not so important.

If you believe that we are made in God's image, then it was God the Father gave us this Free Will when we were first created. The flip side of choice is unconditional love because you cannot have unconditional love without Free Will. The reason I state Free Will is that there can be other types of choices made by choice: guilt, anger, even denial. To have a Free Will choice a person must be free of any external forces and only motivated by love from the Father, the Spirit of the Son and the Spirit of truth. There are times when we must have self-love but that is only when you are being self-caring.

As a matter-of-fact the angels, when it came time for them to make a choice to follow GOD the Father or Satan they only got one choice and that's only because they were not created to experience GRACE! I do not believe that this was limited by the lack of love but just because angels, being created just above men were not created for grace.

Now back to the choice; when my wife chose to stay with me it was done out of selfless love. That is how choice was designed to be made. Every decision that GOD the Father ,Son and Spirit does is selfless and out of love. And from what the Apostle Paul tells us I Corn. 13 we can surmise that Satan did not rebel out of love!, except for himself.

I could say more, but it would do this subject a tremendous disservice. I do not wish to do that. The only perspective I can give is my own and I believe that love is the only choice we can make. It was made by my Father in heaven, his son who is my Savior, and the basis for the truth given by the Spirit. That is the choice that his Son made in the garden , and that is the choice that I believe that my Father in heaven wants me to make.So make the choice of love.

Love to all,Gene/slc

Wednesday, July 14, 2010

Dark Things......

Good afternoon to all, some updates on whats going on. First, Sen. Lemieux's office is still working on my Medicare foul up, this is frustrating to me because I need things and home health help and physical therapy. Second, I have just finished my 5 day steroid treatment and I am back where I was 6 days ago. During that five day period my overall ability improved and the pain was eliminated. I hope my wife calls my doctor for long term steroid use because I am in pain. I have not gotten up except to go to the bathroom yet today because I just don't feel like it. This could easily turn into a three pain pill day. Third, today is my 29th wedding anniversary to the gift from my father above, Sharon. Fourth, our five pound chihuahua has been sick and is coming home from the vet today, an unplanned expense. Now on to today's post.....

About two weeks ago my wife brought this concept to my attention; I call it the reduction or elimination of the "dark things" in our lives. To be specific, I make the choice to monitor and manage all the dark things that I say, hear,and watch. I choose simply to do this out of love for my wife and for my family. This disease has been difficult but especially so on my wife Sharon because she got hit by every thing. What I choose to do, I do for her and to be obedient to the will of my father in Heaven

Again, to be specific; there are certain TV shows I will not watch. There is certain music I will not listen to. Whenever I think of it I bring up this mental picture of a a barrier of love around my family. This is not my love this is my fathers agape love that he gives to us. Since my primary source of entertainment is the TV, I am picky about what watch. I wish to be clear here so I will restate this belief in a more concise manner: I believe that there are evil forces that exist that have manifested themselves through my disease and the results of this disease.

I must be very careful and always remember that I am not being punished nor did I commit "bad karma". This is not the "luck of the draw". I simply choose not to be discouraged or allow my encouragement to be taken or stolen from me. I also choose to protect my heart. That protection extends to my wife and family which are the two things plus the relationship with my father in heaven that make up the three things that are most important to me, even more important than my life itself. This is not done from a legalistic "have to " position but from a father's love for those who love him. It is my choice to set and be the example of love to my wife and family, this extends beyond the encouragement for husbands found in Ephesians chapter 6.

So here I am asking what does this really mean? Am I just guarding whats important or am I connecting with something much much bigger than I am? These are thoughts that I must consider and try to answer in next weeks post. Already the thought of an old barn comes to mind..........

Love, Peace, and Understanding to all, please keep Sharon and I in your prayers, Gene/slc

P.S. For more information on this viewpoint read C.S. Lewis's, The Screwtate Letters

Wednesday, July 7, 2010

My life is not my own...

Greetings everyone.I hope everyone had a great holiday over the 4th. My holiday was much like everyday except my wife was with me.

My granddaughter Sharon ,not my wife Sharon, is typing this for me since my hands are swollen and stiff.My daughter Rebekah and her crew has come and gone, She got allot done but there's more still to do.

Now,onto my statement: My life is not my own. I want to say upfront that being a believer in Christ; I know I was bought with a price and that spiritually I belong to him. That is not what I am talking about, I am talking about your everyday,day-to-day happenings,my life in general.Since I depend on others to help me out of bed,or up from the chair,or even take me some where I need to go, since I no longer can drive,I feel my life is no longer my own.Some might say,Gene, get up get out and move on with it.It is not that simple since I depend on others for help For example I am laying in bed with swollen hands and my granddaughter Sharon is typing in this Post.If she was not as gracious in doing this for me,it wouldn't get done

My life now revolves around the t.v. the satellite, the bathroom,and two or three meals a day.Fortunately my youngest son and his family have moved in to help with my care.This has helped tremendously.

Now back to the subject at hand;even when we get in a car to go some place it is a chore to carry the extra stuff I need and to get comfortable.My caretaker and I both get wore out by just doing this.This is why I don't go to church or even don't try to find a church.There is no easy or quick and dirty solution to this issue. Still waiting on my SSDI means I can do nothing outside the house that cost money.Why even eating in has become a chore!

Since this is a life and situation that is in progress. This story has not ended but this is where I am at right now,today.I'll be married 30 years in the middle of this month and I'll be 51 years young later on this month.This is not where I expected to be when I reached those milestones.I'll say more when the time is best.

Continue to pray for us, Sharon and I. Things are better because of the two positive changes I mentioned in this post but I wish for more.The challenge I wish to leave you with is : How much of your life is your own?

Love and Blessings,Gene

Wednesday, June 23, 2010

The Spinning Plates

First; My sincere apologies for being absent for I think two weeks. My ALS fatigue got really bad. My typing skills have gotten so bad that my grand daughter Lynette is typing for me. Yes I know i need Dragon and I know what it is but i need help and i keep asking and nobody helps: such is life.

Second; I don't know when i will be able to post again but I am going to shoot for once a week. The days of Gene Chapman posting to my blog once a day, have passed.

Third; My daughter and four of my grand kids are down from Pennsylvania are kickin' butt, takin' names, and solving problems. My "honey-do list" is backed up for years. Also, the refrigerator died and Sharon had to run and get a new one last week.

Last but not Least; I go for an EKG on Thursday to establish a baseline for the experimental pseudo bulbor drug, the false emotions are becoming a problem.

Now onto the point of Today's blog; I realized this morning while Sharon was getting ready for work how hard these past few months have been for her. It made me come up with a mental image that i am going to try to communicate with you and I am going to start out with two images; one is a plate spinner, you know, a person that spins plates on wooden sticks or dowels and the second one is a neutral gray and empty room.

Close your eyes, think of my wife or someone that is very close to you is standing in this room. Next, put that person on a unicycle (a one wheeled bicycle with a seat and pedals). The person you have imagined here is struggling a little staying balanced because they're not used to this unicycle. Now imagine this person on the unicycle spinning a place on a stick. Imagine if you will that this person has over 100 spinning plates in their hand and they're using the other hand to keep all of those plates spinning. This is what my wife, Sharon, has been doing since January 23rd, 2010, when we got the diagnosis of ALS. If you can consider even taking the place of this person you can fully imagine, the words that might describe how you feel; frustrated, angry, confused, overwhelmed, irritated, etc. It horrified me to even think that my dear wife who I have been married to for 29 years next month had endured days of this dilemma, let alone months.

The reason I came up with this image was to convey a truth to my wife and I: "If everything is thrown at you, mistakes will happen!" Because of this truth none of us, myself included, should ever beat ourselves up, put ourselves down, or think of ourselves less than who we are. When your riding a unicycle, spinning over 100 plates, some plates are going to fall, hit the ground and break. I thought about the next part and discovered that the real trick is spinning the plates that matter and doing the best i can on all the others. The best i can do is all anyone can expect.

I am going to leave this entry right here for right now because I want to convey the feelings of what a sinful world we live in. This disease sucks, I hate it and I do want to be healed from it. But, as long as father says no, I will take each day as it comes, make the best of it and let his grace be sufficient. I am thankful for my family and especially my wife: she is truly a gift from father.

Have a blessed week, I love all of you, continue to pray for Sharon and I: I think the light is showing up at the end of the tunnel... Gene
P.S. My granddaughter Marci listened to it and my granddaughter Sarah editted and made corrections. Each one gave and I gave back, a kiss of love. Thank you Sarah, Marci, and Lynette.

Wednesday, June 2, 2010

Perspective............

Today is a slow day for me........I didn't want to get up today. Nope, nine, not at all. BUT, life still goes on. I didn't want to stay in bed all day. Besides, I had to get up and Pee. Maybe that's my motivation, plain and simple. Consider & vue this link:

http://www.space.com/php/multimedia/imagedisplay/img_display.php?pic=herschel-galaxies-100528-02.jpgcap=Thousands+of+galaxies+crowd+into+this+Herschel+image+of+the+distant+universe.+Each+
dot+is+an+entire+galaxy+containing+billions+of+stars.+This+image+image+was+taken+in+a+
region+of+space+called+the+Lockman+hole%2C+which+allows+a+clear+line+of+sight+out+into+
the+distant+Universe.+This+%22hole%22+is+located+in+the+familiar+northern+constellation+
of+Ursa+Major%2C+The+Great+Bear.+Credit%3A+ESA+%26+SPIRE+Consortium+%26+
HerMES+consortia

The previous item is what I am going to talk about today; I didn't plan on it, but It just came up & it got me thinking. The link is above and it will take you to a pretty color picture. ( I hope you can click on it & not have to type it in.) If you scrool down, you will see the description. Each colored dot is a Galaxy, just like or similar too our Milky way Galaxy. In each of those Galaxies are at least several billion stars like our sun. Around most of those stars are planets like the planets that exist in our solar system. Does anyone want to count those dots?

This image is just from a 1 degree arc of sky from the Ursa Major (the Great Bear/Big Dipper) portion of the sky. Your fist, is about a 10 degree portion of the sky. Sooooo, this image is taken from a portion of the sky that is 1/2 (half) the width of your finger!!!! (It's from the year old Infrared Herschel Telescope. It can see though gas & dust particles.)

Now please, stop and think about the SCALE of this picture....... Do you HONESTLY think that this all happened by LUCK, Chance or happenstance? Or, as I believe, that this Universe, Galaxy, Solar system and planets were made by Intelligent Design. I/We call this Intelligent Designer GOD/FATHER/PAPA. I futher believe that FATHER desires to have a relationship with me (he sent his son, didn't he?) AND has provided a way for him & I to have a relationship (the Holy Spirit) through the dance we call LIFE! I may not like my choices, or his choices, but I love him, just the same because he first Loved me! Did he have me or each one of us in mind, when he created the "Lockman Hole" as that picture is being called? I would like to think so or BELIEVE so. Since he did and he desires, so desperately, desperately enough to send his son to make a way, so that every one of us has a way to meet up with him and relate to him; not just for a brief moment, but for an eternity!

This thought just blows me away, just plain away. Even my meager description does not do the picture or Father, Son, Spirit, or my belief ANY justice. Just think, it all started with getting out of bed to go Pee. Now consider the irony in THAT thought................. Love, Peace & Understanding, Gene

Tuesday, June 1, 2010

First Tuesday...................

Good morning to all!!!!!! I hope everyone had a safe, fun, enjoyable holiday... As promised, I didn't even touch a computer or a cell phone while I was on holiday, which was OUTSTANDING!!!

First thing, first: ALS clinic was FANTASTIC! Many thanks to all involved but especially, Susan, Val, Debbie, Dr. B & Elke. Many tips, tricks & exercises! I go back in Nov/Dec 2010 for a 6 month follow-up. I really enjoyed the premarital discussion with Elke.

Drug study day: Went VERY WELL, INDEED! All my muscle performance stats were unchanged. No Gallbladder sludge (it was 100% clear) My. in-depth breathing performance was 81%!!! That is only off by 3% from Feb/2010! The spascisity has gotten a bit worse, so we have upped the muscle relaxer(s). (I hope Sharon will buy me some bottles of Merlot!). The good news: Virtually no change in the ALS since the baselines in April/2010!!!!! Looks like I will make it to at least Thanksgiving & my Grandson's wedding! Now for the bad news: the Pseudo Bulbar spells (inappropriate crying & laughing) has come on. They have medicine they can give me to eliminate those spells that are not anti-depressants. I have to find a pharmacy that still can mix drugs at the correct ratio.

After Jacksonville, we did a four hour drive, with one stop for the sake of my butt, to the Villages to see my dear sister-in-law & brother-in-law Sandi & Tom. We spent, late nights, plenty of laughs, some glasses of Rose' and some tears, and we had a happy & fun filled time by all. Sharon got some time off for caring for me, some time with her sister & started an Ebay store by the name of "JESS's Place; go check it out! Kudo's & thanks to Katey & tater tot, Mike & Kelly & Paul & Suzanne for all stopping by; It was a joy to see each & everyone of you; Thank You.

I learned some things about life in general & myself specifically, that I will share the rest of this week, so stay tuned for more! I am very sore & tired from over exerting myself, so I will go and rest up. A recent news bulletin: My daughter, granddaughters and my grand-daughter-to-be will be here either June 10th or that following weekend! Some very important young women that are exceptionally important to every one down here, especially to me!!!!! Since my grand-daughter-to-be, Natasha, has never been to Florida; we need to make plans for Disney, Universal & Seaworld, the Springs, the Beach & the Gulf of Mexico!!! Plenty of SPF lotion too!!

Well enough of micro managing what we all are going to do; I am just glad I have the ability to do those things, still!!! I notice we are up to eighteen followers on the blog, WOW!!

Love, Peace & JOY......, to all, Gene

Wednesday, May 26, 2010

My apologies.......

I want to first apologize to everyone for not posting anything yesterday. The following is not an excuse, just an explanation.

Yesterday was really tough for me. I woke up, felling OK, but as soon as I got moving around; zap! No energy, no drive, no desire, no nothing! Yes, I did have something. That "something" was aches & pains all over! I had to wait till my son came over to bring me breakfast, for him to open the pain med. bottle, since I couldn't. After breakfast & one pain pill; I didn't wake up until 12:30 pm. When I woke up, I got caught up in lunch & arraigning a phone appointment for today. After lunch, cat napping until Sharon got home at 6pm. Dinner was brought to me, thank you Mike, and then I helped Sharon refill our meds, then Charlie & the Chocolate factory and a shave with my new shaver, thank you Sharon, then bed time.

Today, a bit better, No pain pill and I am posting on the blog.

As for where I left everybody hanging on Monday: Here is why I am angry with BOA in general there lawyers, specifically. When we were told we got our mortgage re-modification, we were told that the one last thing we had to do was come up with and forward to BOA by 6/14/10 was the $2000.00 the lawyers want to settle there bill for BOA! A big concession since there last bill was ten times that amount!

So after discussing this situation with Sharon on Sunday evening; We have come to the conclusion that if we can raise that amount, we can save our house. If not, we move in with somebody, either Mike or Steve or some cheap trailer in Alachua. Now this $2000.00 will be a stretch. We blew thru our savings and our EM fund, when we remolded our house & moved in. We sold everything of value on eBay. The wetsuit that recently came back & has to be reshipped, is the last item of my scuba stuff. We are living more of a paycheck to paycheck than ever before!

Since I lost my income in February of 2010 & we found out my SSADI was fixed and scheduled to not start until August 25, 2010. My monthly check will be right at half of what I was making when I was working; this transition has been tuff & depressing. That doesn't even include the Medicare Part B premium! Sharon & I have gone from loving our lives to hating our lives. Not life itself or even our lives together; just life in general & feeling POWERLESS to change it! We are very aware that one or both of us could slip into a depression, so we are constantly on guard to this evil.

We are not in a position to BORROW this money because, frankly, we don't know if we can pay it back or even when we could pay it back, at all! Sharon's sister Sandi Fentress has offered to be a fund raiser, so if anyone feels led to contribute; her number is 352-636-1996. I believe her email is frentress@comcast.net.

This is our LAST option. We are asking for Medicine, in the form of whatever you are led to give, after reading this. It can be anonymous or not; it's your choice. We just need it by 6/14/10 or the Sheriff gets a sale date from the clerk of the court who gets it from the bank. I know it's NOT PRETTY, but that is the reality of the situation.

In conclusion, In this mortgage re-modification program that Congress has funded twice, I believe; the ONLY people that truly win are the lawyers. That's not surprising, when lawyers came up with it, a lawyer signed it into law and lawyers reviewed it and put there blessing on it. By the way, that $2000.00 is two months of mortgage payments and the payments wouldn't start until August of 2010. Mike & Madeline have been considering moving in with us for two months now. To help with my care & all of our financial needs, by merging two households into one. We & us can not to anything until this is resolved.

I think the place to start is where Shakespeare says in Hamlet, "Kill all the Lawyers.........."

Love & Peace to all, Gene